I received the following e-mail from a former caregiver who, for obvious reasons, did not want to join the forum. She did however want to share her experience in the hope it would help other patients and caregivers.

e-mail: Monday, February 13, 2012 at 01:44:27

My husband passed March 18, 2011. He had advanced parkinsons, atrial fib, chronic bronchitis. He had parkinsons for 22 years. He was 71.

I read her [caregiver forum] of caregivers trying to decide about assisted living. I learned that it doesn't work for advanced parkinsons patients. In my husband's case he needed more care than assisted care can provide. He would not go to a nursing home. I hoped that assisted care would work but it didn't. He got very depressed there and the bronchitis became an untreatable respiratory problem. He was hospitalized but only got worse and died.

If at all possible, and your love is strong enough, keep him or her home until the end. There seemed to be no good choices. I was so afraid he was going to die under my care and I thought the hospital would do better but I don't think it mattered, he became just so ill and like I said, assisted care just could not provide enough care. I just hope other parkinsons patients don't have to suffer to the end like my husband did. While in the hospital he wanted to die and just couldn't eat or take his pills. He suffered so. They couldn't get the pills down so they tried to force a tube down his throat which he fought and it didn't happen. He had blood all down his throat and couldn't talk and say goodbye. He ended up with a tube through his nose for liquids. It was horrible. I kept thinking they would get him well and he was shaking so hard from not taking his stalevo. His directive was for no tubes and to die at home. I couldn't do either for him and have to live with that the rest of my life.

Thanks for sharing. This is a dilemma many of us face and even when dealing with "professionals" recently, they have suggested a nursing home.

I've been recently researching a "plan B," which I've been trying to formulate should something happen to me that takes me out of commission for awhile or indefinitely. Professionals don't understand that we caregivers KNOW our spouse won't get their meds on time and as needed in a hospital or nursing home environment. Only someone who is "OTJ" 24/7, such as a spouse, gets this, so it seems. Gets that the impact can be long-term and the result of a stay at either facility can be the beginning of a fatal decline.

My spouse and I were having a heart-to-heart visit about this yesterday and I expressed that my two "great fears" and something I see as "high risk areas for PWP are: 1) he falls yet again or 2) he has to go to a hospital or nursing home facility causing even a worsening of his condition in one fashion or another.

In making our "plan B," his perception of his condition is skewed or was skewed at the time as he believes he can stay home alone all day and only needs help at night. This same day, he froze up in the bathroom, needed help dressing, and always needs someone to prepare meals and ensure he gets his pills on time. I'm still working on the plan B with a social worker currently so he will get an outside perspective and input as well and it is not just me making suggestions.

I have always been less than enthusiastic about assisted living. For so many people, it's only a temporary solution. Once a person needs a higher level of care that the ALF can't provide, the next step is pretty much limited to a nursing home. For what you would pay for ALF, you might be able to hire a health aide.

On the other hand, my husband's uncle, who had Alzheimer's and failing eyesight, had a good experience with assisted living. They took care of him until he passed away. My husband and I were glad that they did not discharge him to die in a hospital.